The chronicle of a family thriving in the middle of a nightmare. You'll laugh a lot more than you expect. Promise.

Wednesday, February 25, 2009

A Penny More

Yesterday was our regular every three week Cardiology visit. Simon was messing with me by not going down for his usual 2 hour nap until 12:30 (usually starting at 11 or 11:30). Our appointment was for 2 and I gotta say waking a sleeping baby (already a no-no) to take him to the Dr's for an Echo Cardiogram and a blood test, is not fun.

Luckily the little man woke himself up at 1:40- perfect timing- and off we went.

For the 2nd time in a row his Echo was not fun for him. Normally he lies back and relaxes either focusing on the TV that they keep on all the time (spongebob anyone?) or the nice spinning light toys that they have on hand.

Simon was having none of it. No spongebob, no spinning light distraction, he was just pissed off and letting anyone with earshot (dog hearing earshot) know that he was unhappy.

Lately he just hates lying on his back, unless he's naked and rolling around the bed in the wee hours of the morning with the mommies and doggie.

He spent the entire time pushing at the hands of the very nice but new Echo Tech Michael. This resulted in the little man also getting a great gob of ECHO gel all over his face and hair. At first I was excited thinking that maybe the gel would be a nice pomade type substance for Mr. LongHairs but alas it was not. We did get a nice faux hawk for a few minutes but then it was was just slimy and wet. Next time we'll try it with reclining gently in my lap. That's what used to work best when we were in the hospital.

After that we were back to the waiting room to stare at the giant fish tank for a little while longer before stripping down for our weigh in and chat with HunkyPants.

Simon weighed a whopping 8.93 kilos so they just rounded up to 9 Kilos!!! This just reaffirms what the GI doc said which is that we're doing great and can even slow our roll some with pushing the calories into him. No one wants a baby with a cardiac issue to be obese- that's not ideal.

Rosenfeld also said two things that just made my day. One: since Simon is doing so well why don't we push our visits back to just once a month AND let's not do lab work this visit either. Yay!! No poking! I know, I know, most of you out there are saying "but what about his BNP #? How can I go another month without knowing the new number?" Well, just imagine holding Simon down while they look over and over for a vein and then remember 366 (our last BNP) and be very very satisfied to wait for another 4 weeks. I am.

We then took our regular trip upstairs to the PICU and said hi to all our peeps. Everyone was so excited to see Simon. It seemed like folks were just as excited to not recognize him, notice me, and then realize that the fat happy smiling boy in my arms was in fact Mr. Shimmy. It was a joyous reunion all around. Even Dr Patel made a point of coming and sitting (really, he sat down and chilled for a while) when Simon was chatting with Dr Rosenfeld. (Simon was really chatting up a storm so I don't use that term lightly).

For the first time I got to witness Simon doing some hard core flirting. Dr. Patel came in and sat across from Simon and I diagonally. Simon would put his face into my neck and then lift it up and look directly at Dr Patel with a huge grin. He did this no less than five times. It was unmistakable and terribly cute.

Other than that, the day was simply lovely, as today has been. Simon smiles and laughs his way through most of the day and is now at one hour on for feeding with three hours off. We will be down to a 25-30 minute feed in a few more days and then we can really work with hunger and hopefully see a reduction in the upchucking. Since we contract every other day we can get some sort of sense of his vomiting baseline on those days when we don't contract and it's really not that bad.

Today however it was that bad. Not terrible but we had three projectile moments; one right into a towel which was great, one right onto Mommy and Simon resulting in a fabulous shower session (think Three Men & a Baby shower scene...anyone? Anyone?), and one last one with Mama on the back porch where I was nervous that Roxie would get a splinter in her tongue from how vigorously she was cleaning up for us. Tomorrow is a non-contracting day so let's hope for less clean up.

What follows are a series of photos from Simon's time with his Auntie Dre this evening. As of late Simon is really enjoying his time in front of the mirror. Let's just say that his Auntie Dre took it to another level.

Self love is important right?

It begins with a simple expression of love

An introduction

An example of how you greet someone that you love

Simon recognizing something good when he sees it

"Hey, you're not bad lookin', do you come here often?"

Simon getting a little fresh with himself

Simon not wanting to stop. (It's a little embarrasing how long he kept that up)

hello my friends,just wanted you to know i'm still reading your blog and appreciate it so much. i send you love and light every night in my prayers. you are so present to me. i have another california friend with a baby in the hospital - leukemia, prognosis very good - and i just can't believe how you all get thru this shit. amazing strong women you are. i'll be in sf in march to see jules' family. hope to have time to track you down.love love lovefrida

About Us

Team Shimmy was started the day our baby, Simon (aka Shimmy), became suddenly ill (8/1/08) with a rare heart condition called Cardiomyopathy. That day, friends and family rallied around us to form Team Shimmy. This team, which has grown to include new friends and strangers from all corners of the world, has sustained us with love, food, kind words and listening ears.
We spent 4 tumultuous months in the ICU at Children's Hospital Oakland. Simon has been steadily improving since that day. He was fed through a tube in his belly (a Mic-key) until December 2013, was diagnosed on the autism spectrum, receives various types of therapies and is still on meds. Oh, and he's the happiest, most engaging kid we've ever seen. Jaime (Mama) works in public health and Laura (Mommy), a former school social worker, stays home to take care of Simon (and to take him to his MANY appointments). To see a 10-min documentary about our family, go to www.youtube.com/watch?v=uGh8dFp2oqk.
This blog is a chronicle of our experience thriving in the middle of a nightmare. You'll laugh a lot more than you expect. Promise.
Contact us at lafitch@gmail.com or jaimejenett@gmail.com